RukaBara.cz

Bára Koulová
16 years old

Until 25 August 2015 (when she was 13 and a half), Bára was a normal, healthy girl: cheerful, carefree, and really chatty. Sometimes, she was bothered by bad headaches, but after various tests ­– MRIs, X-rays, EEGs and eye exams – she left the neurology unit with a recommendation for back therapy. She also got weak glasses, and started hormonal treatment as another possible cause. …

Unfortunately, nobody looked into the possibility of a vascular defect, which was what ended up emerging in August 2015, when Bára was on holiday in Italy. Without any sign of warning, she literally collapsed in the street and lost consciousness. An immediate transfer to the hospital and a speedy operation saved her life, but she suffered massive bleeding in the left hemisphere of her brain…

My story

25 August – 21 September 2015 – Padua Hospital, Italy…

… Barča spent the first two days in the intensive care unit, before being disconnected from the machines and transferred to a regular ward. But she was still in a semi-comatose state and didn’t wake up. Not even the doctors were able to give us much advice; every day we went to ask if she was communicating yet. All day long, her right eye would stay open, and it closed when she fell asleep. Later, she would sometimes smile at a film, and would quiet down if someone read her a book or she listened to Harry Potter… At the beginning, she didn’t move at all, then she started to move her left leg and arm…. But she has no memory at all of that period. It wasn’t until 19 September that she first knowingly squeezed my hand to show she could hear me…

21 September – 19 December 2015 – Motol Hospital, Prague…

…It was only after arriving in Motol that, little by little, we started to find out just how much damage the “stroke” had done: at first, she was fully paralysed in both the upper and lower limbs on the right-hand side and had no feeling at all in the right-hand side of her body… She had to learn to function using only her left-hand side. Imagine trying to roll onto your side when your right half isn’t listening!! Or trying to swallow or drink through a straw when the right-hand side of your mouth isn’t listening… Your head would always be flopping onto your right shoulder, because you couldn’t hold it upright. She tried out her first words, we worked on the double vision (when her eyes were looking different ways), the eating with a gastric tube, the nappies… As a right-hander, she needed to learn how to write and carry out tasks using her left hand… In late October, she first moved her right leg, then gradually we tried to get her sitting and then standing up… Now she could go to the bathroom and toilet using a wheelchair, brilliant!! It’s at times like these that you realise how complicated “ordinary things” can be… Unfortunately, her language centre was affected by expressive aphasia: when Barča knew what she wanted to say but was unable to formulate or write down the words. She mixed words up or had trouble remembering them, was confused by noises around her and couldn’t concentrate for long, becoming tired after ten minutes…

…At Motol, she was able to “go out” in a wheelchair as she could move her right leg slightly and stay in a sitting position… She still couldn’t move her right arm at all…

January – March 2016 – Janské Lázně (spa town), Czech Republic…

… At the spa, Bára learned how to work with a body which only has feeling on the left-hand side. She started learning to walk… Imagine having to learn from scratch how to master every single muscle because the nerve cells are not there any more, having to regenerate them, one by one… But how, when you don’t even know those muscles exist…? At the spa, the corridor to the canteen, which was around 40 metres long, was a “big journey” and a “great challenge” for us… Every day, we did speech therapy, and Bára coloured in relaxing pictures for an hour and a half each day to exercise her left hand, which wasn’t used to writing and handling things… On 8 January 2016 (almost five months in) she began to be able to move her right shoulder and elbow a little bit, but there weren’t many ways in which to move them, progress was slow, and her arm was weak, so Bára didn’t even want to use it…

… At the spa, Barča was able to go out alone on short walks using crutches… For longer distances and for moving around at home, she still scuttled around in a wheelchair, so at least she had a little “freedom”…

April – December 2016

…After leaving the spa, Bára started two weeks of intensive therapy with Dr Renata Vodičková, who specialises in therapy using PANat inflatable splints. Then, in May, she spent 14 days at the Motol Hospital rehabilitation clinic… Lots of exercises every day, and from May onwards Bára was glued to the exercise bike, cycling four hours a day, building strength in her body and her right leg… Speech therapy every day – naming pictures, just using individual words, interjections and simple sentences without verbs for the moment, like when little children learn to talk… Her ability to find words depended a lot on how tired she was and how stressful the situation… In June, she stopped using her wheelchair altogether, her walking slowly improved, although she still needed someone to walk with her so she wouldn’t fall… In May, we hurriedly drew up an individual study plan, hoping to finish the whole school year so Barča could go into the next year with her classmates… We just couldn’t imagine how she might manage to make friends with a new class, given her limited communication abilities… All her tests needed to be multiple choice, she was only partly capable of reading her assignments by herself, she had trouble working through the dense, confusing texts… We worked all through the holidays, and in September we successfully completed her third year at the grammar school and started the fourth… We did exercises for her arm using the Motomed movement trainer, mirror therapy, massages and stretching, so that the tissue in her unused arm didn’t stiffen up and so she could keep up the movement in her joints… In November, she had another 14 days at the rehabilitation clinic in Motol Hospital… As far as her illness was concerned, Bára sadly still couldn’t, say, read a book by herself, even with the font size increased on her e-book reader… And so unfortunately in her free time she was limited to her tablet, the TV and her “best friend”, who came with us everywhere: on holiday in the countryside, to her rehabilitation stints in Motol, and on afternoon visits to Grandma… Mr Exercise Bike :o))

27.11.2016 …

…After 15 months, Bára intentionally moved her right hand from the wrist all alone for the first time!!… And that awoke new hope in us that all was not yet lost. We wanted to fight on – we couldn’t bear to imagine that she might never use her right arm again… All the same, the fact that she wasn’t running around, being active, or telling her friends what was bothering her… That feeling of responsibility for your child’s future keeps pushing you on; you’re willing to try anything, at any cost.

2.1.2017 …..

One of the ways to help Bára past her “mental block” and “force” her to use the affected arm more often, thereby generating new nervous connections with her brain, is CIMT therapy. Unfortunately, it is only available in two places in the Czech Republic: Lázně Klimkovice in Ostrava and Axon, a private neurorehabilitation clinic in Prague, where Barča began her first three-week course of therapy in January 2017. This treatment is not covered by her health insurance, and each three-week course costs 42 000 crowns (over 1 500 euros). This type of therapy, in which the healthy hand is held still by a special stint, forcing the patient to complete everyday tasks and additional exercises using the affected arm only, was recommended to us. It needs to be repeated several times a year, always with a month’s rest in between sessions…

In this way, for three weeks the brain receives fewer impulses from the healthy arm, and very intensive impulses from the affected one. This sends a clear message to the brain: “I want to use this arm, it needs to become connected again: create new nerve cells…” The second effect is motivational: videos of the required tasks are recorded on the first and last days of therapy. This feedback is hugely important: it shows the patient that their arm really can do things and that there is potential for improvement, that it’s not just a useless stump that ruins everything, knocks things off the table and is no good for anything… The third effect is that, during the therapy, Bára can’t use her crutches for walking because she has one arm in a splint, which means that she needs to try to walk without them, even over longer distances…

Why did we create this website?

Unfortunately, our doctor (and most likely all doctors) was unprepared for a “child post-stroke”. On the paediatric ward and in the children’s department of the spa, nobody really knew what to tell us… Even non-profit organisations that help stroke sufferers tend to be directed at adults only… Neurorehabilitation (such as the afore-mentioned CIMT therapy) isn’t covered by health insurance, so the standard rehabilitation facilities focus mainly on physiotherapy and ergotherapy (improvement of everyday tasks using the healthy arm)… But they provide almost no structure for the renewal of nervous links between the arm and the brain, and the people there can’t give us any advice, so everything is down to the family, which keeps researching, reading, and paying…

For the first time recently, distribution companies have brought robotic facilities from abroad to the Czech Republic to be used in combination with virtual reality for the rehabilitation of the upper limbs … However, these devices are rather expensive, ranging from around 350 000 crowns (just for fingers and wrist) to over a million Czech crowns for the whole upper limb (approximately 13 000 to 60 000 euros). There are only few hospitals and spa facilities in Czech Republic who have it. We know that Axon Neurorehabilitation Clinic is considering acquiring one of these machines, and my husband and I, along with our friends, would like to help fund any such acquisition… You can see how these robotic rehabilitation aids work in the video below… This equipment enables the pacient to do again such move as before the stroke not only in wrist but the whole upper limb, and makes exercises more motivating and fun, especially for children. We believe that it would represent hope and make this extremely tough and long-lasting therapy easier not only for our Bára, but also for lots of other children (and adults) being treated at the clinic – whose parents and relatives are slowly giving up hope that their loved ones will ever hug them back with both arms…

for therapy for all the children receiving long-term treatment at the clinic, write „all children„

Axon Neurorehabilitation Clinic’s bank details

IBAN: CZ8720100000002200739204

Thank you very much in advance for your donations… And please know that your interest and help is a huge source of motivation and a reason to keep on trying, for Bára and for all the patients… Bára’s willpower, along with the faith and perseverance of all her family, is the most important requirement for success and her continued improvement…